I Only Found Out Yesterday

Hello everyone, I haven't a clue what Im talking about and Im quite scared, I was diognosed yesterday as haveing Crohns Disease and given 6weeks steroids to try to get this thing under control. It has taken over a year and gallons of moveprep, CT scan and yesterday a colonoscopy I haven't a clue what to expect as my Doctorj ust wanted me to take the med's for now try to enjoy Xmas and return at the start of the New Year and go from there. Dont get me wrong he is a really good Doctor but I cant just sit here for two weeks fearing the worst for both myself and my family, I need to know so many things not least how this disease will afect my children and granchildren. If ther is a patient person out there that has some time on there hands and can answer me a few questions simple I would be very greatful.

Regards Marg.

Hi Marg
Welcome - you will find this forum full of helpful information and wonderful people.
I was only diagnosed two weeks ago - and yes it is a shock. Six weeks of steriods for me too - I read the instructions inside the pack and almosts frightened myself to death. But it's not so bad - within a few days I was feeling much better - the steriods really should help to get your symptoms under control and fast. Please post your questions on here and someone will be along soon to help.

Most importantly, give yourself some time to get used to the idea. I am just starting to get my head around it all now and have good days and bad days. The good news is that you know what the problem is and will now start to get treatment.

Try to enjoy Christmas and take each day as it comes.

Hi Marg

Welcome...I will try to see if I can answer some of your questions. I have pleanty of time and hope that I can be some help for you!

Welcome Marg. Sorry to hear that you have gone through so much just before the holidays. I went through similar problems back in 1985 three weeks before Christmas. Mine was bleeding ulcers to start with before being diagnosed with CD in Febuary of 86. It is a very hard thing to wrap your mind around,but remember one thing. It isn't the end of the world. And you are not alone anymore. You found this forum.
The best thing you can do for yourself is be very proactive with CD. Educate yourself about this D. Read everything you can about it, symptoms, meds, alternative treatments, natural meds and diets. Learn to ask questions no matter how dumb you think they sound. Keep diaries of what foods trigger pain and Diarreha, when the pain is the worse, what good certain meds do for you and what things will sooth sudden flare-ups.
Also a big help is a strong support team, whether it be your spouse, parents, kids or friends. Remember that you will have a great support team here because we all know what you are going through, we not only have been there, but we are there now.
I have 3 grown sons and none have had any symptoms of CD as of yet, plus I came from a family of 10 kids and I am the only one with CD. I'm the only one of all my relatives to ever have it.
Good luck with everything and make sure you browse the forum for answers. Jump right in with any and all questions.

Hi Marg and welcome to the forum... this forum has vital information and a great bunch of people to help you in any questions you may have. It is scary and I have had Crohns over 33 years but dx for 17 years. I too have family and depending on the age group there are many books that simplify or explain the basics of having the disease and how everyone can help and understand the disease. I was terrified in the beginning as there were no computers in the days I was dx. Not many books and not alot of information. Having a good GI makes a big difference. Like Pirate says educate yourself and get to know what foods make you ill and check different drugs options to help you stay out of a flare.

As previous mentioned, the more questions you ask, the less scary it really is. There is alot of support here, keep us updated.

Hi Marg and :welcome:! Soooo sorry you have been given this news right before the holidays! I think your doctor has the right idea though - putting you on the steroids to try and quiet down the inflammation and let you get through the holidays before getting a bigger game plan in place. The truth is you kinda have to go through this first step (with the steroids) so you can get your disease hopefully quieted down to see where you need to go next. And as Miss Rose said - give yourself some time to process everything. Many of us have had this disease for a long time - and we live a relatively normal although at times "oddly humorous in a strange sort of way" life. You will figure more of that part out if you scout around on the forum - we like to try and put some humor in with the disease part so we can all keep our sanity! You'll be ok - and we are here to help you with any questions! Learning everything is a slow and very personal process and we are happy to help you through it with what information we can share - so ask away! (and don't be embarrassed by anything - we've been there :O)

Hello Marg and welcome to the forum!
You are going to find a ton of useful information here
and a lot of compassionate and friendly people.

Any questions just ask away...
someone is usually around to help you...
either to try and answer your questions
or lend an ear while you vent.

The steroids click in quickly so you should start to feel better quite soon...
then when you go back to the doctor he and you can discuss
a treatment plan.

Welcoming hugs~Nancy

Hi and welcome Marg

Sorry to hear of your diagnosis right before Christmas! As others have said, the Prednisone should have your symptoms much improved quite quickly so you can feel okay over the holidays.

I was diagnosed in July and still struggle with the idea of having Crohn's let alone feeling so yuck. I guess you just have to take it day by day and learn as much as you can - remember knowledge is power!

:welcome: Marg....I am sure you have a ton questions. I hope you are having some relief from your symptoms now that you are on steroids. Ask any questions you may have, and someone would be happy to share their experience. Good luck

:welcome: Marg!

Hi Marg,

Nothing wrong with being scared. Perfectly normal reaction.

Hopefully we can answer all your questions.

Welcome to the club! So sorry you have to go thru this during the holiday season, but like everyone said the pred should do wonders and start to make you feel better just in time for xmas. I too was only diagnosed mid Sept and still trying to get my head around this disease, but have found the more questions and information I get about it the easier it has been to deal with it each day. I was put on pred for the first 10 weeks after being diagnosed then was put on Imuran but got taken off that due to a reaction, now Im on 6mp and so far so good. I must admit the last 2 weeks I have really started to feel like life is returning to normal! Yah!! So it can take some time but you will get there and your life doesn't have to be completely controlled around this disease. Yes you will have to work out what foods you can eat without experiencing pain or the D and you probably will even have to modify your current diet to adjust to this disease but once you have it all work out with diet, meds and lifestyle you will get there and live a fairly normal life. Some people even go years without any issues, hopefully that is you. Good luck and don't hesitate in asking any questions big or small.

Oh god Marg I'm sorry. I'm sure your freaked out and I know your scared and it is a perfectly normal reaction but if you can atleast please try not to freak yourself out too much. I will also caution you, don't google Crohn's disease if you are the worrysome type. You will also read on here people are going for and have been through surgeries and years of pain and awfulness and without a fix. I'm not going to say these things won't happen to you but I don't want you to think Crohn's disease automatically means surgery and the rest of your life ruined. If he is telling you to take Christmas to enjoy yourself I will say that I'm sure your situation is not going to drastically change overnight. I have Crohn's and yes I've had bad times, never anything like a lot of people on here have though. There is always an answer to your questions and another thing that may comfort you is that there is a GI usually on call at almost every hospital 24 hours a day .365 days a year including Christmas day. If you ever need anybody they are there for you in an emergency. Also if you have any questions no matter how small, no matter how complicated, and no matter how long you may think they are I encourage you to ask away on here. You'd be suprised how much we really know as a collective group. I've not been here long and learned more in that time than in the 2 years previous I've had the disease. I know that you'll do great and remember we are going through this too and we will support you no matter what. We also love success stories so when you get around to feeling better we want to know. Good luck and I know its hard but try your best not to worry yourself too much and have a great holidays with you and your family.

hi Marg, and a warm welcome to the forum

i know it's a shock to get diagnosed with anything... we spend so long worrying and waiting, wondering what the result is going to be, and then when we find out it has a name it's a double-edged sword: relief that someone knows what it is, but also the fear of how we go on from here....

i was diagnosed over 25 years ago, i've had surgery (6), and am due for another one shortly.. but in between i've lived a good life mostly, albeit altered to accommodate dietary issues, and probably missed out on a hell of a lot due to fatigue. a diagnosis of Crohn's isn't a prescription for doom, gloom and pain necessarily - for a lot of us it's just something we have to take care of, and change our lifestyles where necessary, especially when Crohn's flares.

it's a learning curve, and you've come to the right place - there is so much info on here.. more or less anything to do with Crohn's is covered, and if you want to ask anything.. anything at all... just go ahead.

Welcome Marg! We'll try to help you as much as we can. You can post your questions here or PM one of us if you want.

WELCOME MARGE, I HOPE things pick up for you quickly...... its a horrible thing, i am recently diagnosed also and it is a struggle... Although at least you have a diagnosis now , i worried for months whilst waiting for my colonoscopy, at least now i can try and surpress the CD.


Good luck x